The first 60 days: Meningioma
Meningiomas grow from the membranes covering the brain and spinal cord rather than from the brain itself. Most are slow and benign and are either watched or removed; radiotherapy or radiosurgery treats what surgery cannot reach or what grows back, and no drug has yet been approved for them. Below, week by week, is what OnCo's record of Meningioma says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: Incidental or small asymptomatic, Symptomatic or growing, accessible.
- RadiologistNamed in the standard of care for: Incidental or small asymptomatic, Symptomatic or growing, accessible.
- SurgeonNamed in the standard of care for: Incidental or small asymptomatic, Symptomatic or growing, accessible, Grade 2, incompletely resected, and all grade 3.
- Medical oncologistNamed in the standard of care for: Small, skull base or surgically inaccessible, Grade 2, incompletely resected, and all grade 3, Recurrent, no surgical or radiotherapy option.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Small, skull base or surgically inaccessible, Grade 2, incompletely resected, and all grade 3.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Observation with serial MRI; many never grow. Treatment when growth or symptoms appear.
Surgical resection as complete as safely possible; complete resection of a grade 1 tumour is usually curative and needs no adjuvant treatment.
Stereotactic radiosurgery (Gamma Knife, CyberKnife or linac) or fractionated stereotactic radiotherapy, with high long-term control rates for grade 1 tumours.
Fractionated radiotherapy after surgery (EORTC 22042-26042, RTOG 0539); proton therapy for large or re-irradiated skull base tumours; observation versus radiotherapy after complete resection of grade 2 tumours is under trial (ROAM/EORTC 1308, NRG BN003).
No approved drug. Bevacizumab, sunitinib or everolimus with a somatostatin analogue on phase 2 evidence; mutation-matched trials (Alliance A071401) and peptide receptor radionuclide therapy studies preferred.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- Which biomarkers have been tested on my tumour (for example WHO grade with mitotic count and brain invasion, CDKN2A/B homozygous deletion and TERT promoter mutation, NF2 loss and monosomy 22, TRAF7, KLF4, AKT1, SMO, PIK3CA and POLR2A mutations, DNA methylation class and integrated molecular grade), and what were the results?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Meningioma, grade 1, Meningioma, grade 2, Meningioma, grade 3.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Incidental or small asymptomatic
- For my situation (incidental or small asymptomatic), which of the standard options do you recommend and why?Guideline options include: Observation with serial MRI; many never grow. Treatment when growth or symptoms appear.
Symptomatic or growing, accessible
- For my situation (symptomatic or growing, accessible), which of the standard options do you recommend and why?Guideline options include: Surgical resection as complete as safely possible; complete resection of a grade 1 tumour is usually curative and needs no adjuvant treatment.
Small, skull base or surgically inaccessible
- For my situation (small, skull base or surgically inaccessible), which of the standard options do you recommend and why?Guideline options include: Stereotactic radiosurgery (Gamma Knife, CyberKnife or linac) or fractionated stereotactic radiotherapy, with high long-term control rates for grade 1 tumours.
Grade 2, incompletely resected, and all grade 3
- For my situation (grade 2, incompletely resected, and all grade 3), which of the standard options do you recommend and why?Guideline options include: Fractionated radiotherapy after surgery (EORTC 22042-26042, RTOG 0539); proton therapy for large or re-irradiated skull base tumours; observation versus radiotherapy after complete resection of grade 2 tumours is under trial (ROAM/EORTC 1308, NRG BN003).
Recurrent, no surgical or radiotherapy option
- For my situation (recurrent, no surgical or radiotherapy option), which of the standard options do you recommend and why?Guideline options include: No approved drug. Bevacizumab, sunitinib or everolimus with a somatostatin analogue on phase 2 evidence; mutation-matched trials (Alliance A071401) and peptide receptor radionuclide therapy studies preferred.
- Am I a candidate for Bevacizumab, Sunitinib, Everolimus, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Peptide receptor radionuclide therapy (PRRT), Bevacizumab, Everolimus, DNA methylation profiling?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “No approved systemic therapy; grade 3 and recurrent unresectable tumours have few options”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Whether completely resected grade 2 meningiomas need radiotherapy (ROAM, NRG BN003)”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Meningioma: the full pageMeningiomas grow from the membranes covering the brain and spinal cord rather than from the brain itself. Most are slow and benign and are either watched or removed; radiotherapy or radiosurgery treats what surgery cannot reach or what grows back, and no drug has yet been approved for them.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- Stereotactic radiosurgery (SRS): A single high dose of radiation delivered to a brain tumour or metastasis by beams converging from all sides, so the target gets a destructive dose while the surrounding brain gets little; no scalpel is involved despite the name.
Every term links to the glossary.